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Genetic and genomic testing can be incredibly useful tools, potentially identifying life-saving treatments and improving patient outcomes.

But there are concerns about how these tests could be used by insurance companies.

• The main worries are that genetic testing results can be used to potentially freeze people out of cover or to increase premiums.

• Life insurance customers are obliged to inform their insurer of anything that could affect their policy when they take it out, which in some cases would include genetic testing.

• The Australian Medical Association (AMA) wants genetic testing removed from the equation.

Wait, what is genetic testing?

Genetic testing is medical testing that looks at changes in genes, chromosomes or proteins. It first appeared in medicine in the 1950s. Since then genetic testing as an industry has expanded exponentially. Today, there are almost 70,000 genetic tests currently in use.

A genetic test can confirm or rule out a suspected genetic condition or your likelihood of developing or passing on a genetic condition.

The most common type of genetic testing is newborn screening and prenatal screening, but genetic tests can also be used by people with a family history of certain conditions, or to identify or rule out a specific diagnosis. 

Genomic testing does a similar thing, looking at a wider test of your DNA to identify any variants. Genetic testing looks at a couple of genes at a time, while genomic testing reviews a bigger picture. 

How could genetic testing potentially impact your life insurance?

Genetic testing’s ability to identify a person’s risk of developing a health condition or their likelihood of inheriting a disease that would require specific treatment means people are concerned this information could be used by life insurers in a number of ways.

• A life insurer can refuse to issue a policy to someone based on certain risk factors, identified through genetic testing. This could mean a life insurer could refuse to cover you based on genetic testing. 

• Your genetic testing could also impact the premiums you have to pay to hold life insurance. 

• There’s also the concern a life insurer could request you undergo genetic testing before providing your cover, if there’s something in your family’s medical history that gives them reason to demand this. 

While there’s no guarantee a life insurer will do any of these things, it’s the potential that has people concerned. The AMA is worried people’s concerns about accessing cover will stop people undergoing important tests that may be vital to their health. 

Why does the AMA want a ban on genetic testing in life insurance? 

On 1 July, 2019, the Financial Services Council (FSC) brought a moratorium on the use of genetic testing in life insurance into effect.

This ruling banned life insurers from using genetic testing on policies under $500,000 - but the average life insurance policy is currently over $700,000. The FSC also banned insurers from requiring, or encouraging, genetic testing. 

The FSC says reporting following the moratorium showed 77% of cases weren’t impacted at all by the results of genetic testing, and only 9% were adversely impacted. 

However, Monash University, which studied the moratorium, found a very different outcome. Its reporting showed applicants with genetic tests that indicated a predisposition to a condition experienced difficulties accessing life insurance.

Their report also showed that Australians were foregoing genetic testing just in case it impacted their ability to get life insurance.

AMA President Professor Steven Robson said genetic and genomic testing were too important for people to be skipping it out of fear it could impact their life insurance:

“Genetic testing and genomic research have the capacity to rapidly transform healthcare in Australia by potentially providing more cost-effective treatment options and improving patient outcomes by identifying a need for treatment before an issue arises,” Professor Robson said.

“The industry has placed its own partial moratorium on the requirement to disclose genetic test results, but we need a legislated ban to give consumers absolute certainty that their genetic status won’t be used by insurers to freeze them out of certain levels of cover.”

Who else supports the ban?

The Council of Australian Life Insurers (CALI), which represents 19 members, supports the ban on genetic testing in insurance underwriting, echoing the AMA’s concerns over the reduction in testing if a ban is not supported.

CALI CEO Christine Cupitt said the industry doesn’t want to use sneaky tactics to deny people cover. 

“It has never been the intention of the life insurance industry to deter people from taking genetic tests that give them more information about their overall health,” Ms Cupitt said.

“Australia’s life insurers have never, and would never, require someone to take a genetic test for the purposes of underwriting.”

If you already have life insurance, it’s worth asking your current insurer what their policies are regarding genetic testing results, and what you’re required to disclose. If their answer isn’t one that works for you, it may be time to review your cover.

The bottom line

• Currently, your insurer can’t request you undergo genetic testing as part of your life insurance application, but if your policy is over $500,000 you are required to declare the results of any testing. 

• The AMA wants a blanket ban on genetic testing being used by life insurers, given that adverse impact on life insurance policy premiums can lead to Australians avoiding important, potentially life-saving, testing. 

• The call for a ban is supported by the wider life insurance industry.

• Many other countries have agreements on how genetic testing can and can’t be used by insurers. 

• The Treasury is considering submissions on the topic of genetic testing results in life insurance underwriting, and will review future policy. 

No matter what the Treasury’s policy decisions are, it’s important to remember that you have rights. There are limits to what an insurer can request from you.

Make sure you’ve done your homework before you speak to your insurer - and always be aware of your rights as a consumer. You can find out more about life insurers and their policies here.